Revelations of a Slummy Mummy

It's really something when a potentially enormous life event gets swallowed up in the chronic chaos of the daily. Mainly because life is so full of the life-or-death stuff it becomes the norm. I'm currently sat in Poole hospital, hanging out in the pre-op ward. Not for shits and giggles you understand- I hate hospitals with a passion and would rather walk across hot coals than choose to be here. I even pass all B-hospital-duties over to S, as far as possible. That's not to say I haven't spent my fair share of time here. I have, which is probably why I hate the place so much. While I completely understand the life-saving benefits of a free NHS, and wholly appreciate the settings which provide that care, for me there's too much association with past stuff. Too much time spent visiting parents as a kid, and too much time here myself in various capacities. So yeah, not my forte.  I'm here because they need to get a growth out and there's a small chance it migh...

I'm a science girl. Unashamedly, I might add. Statistics. Evidence. All that good shit. That's not to say I don't also hold some entirely irrational and non-theory grounded opinions. I do.  - I ALWAYS look left to right when I'm crossing the train track in Poole High Street. (Yes, Poole High Street has an actual train track running straight through the middle of it.) If you think about this it's entirely ridiculous. I've yet to see the invention of an invisible silent train that doesn't trigger the barriers, and I'm pretty sure that won't happen in my lifetime.  -As far as possible, I avoid stepping on these at all costs: In my overactive imagination, each manhole (square?) is a trapdoor-style portal into the underworld, waiting to suck unsuspecting passers-by into a parallel dimension. The only basis I have for this is Red Dwarf. Hardly the height of empiricism.  - I smack the TV if it's fuzzy. No reasoning. None. I am well ...

Half term sucks. It is not a yay-we-get-to-lie-in-and-laze-about scenario. Not when you have a B, who, from the moment he wakes up to the moment he goes to sleep, needs line of sight supervision. His favourite activity at the moment is posting. All the shit, in all the places. I am done with fishing tiny random lego pieces out from behind the radiator, un-wedging books from the miniscule gap between the DVD player and the unit, and risking my actual life by blindly groping around for toy cars amidst the wires behind the TV. The most annoying thing? The posting of random items IN the bedside lamps. Why? Sweet Lord, why? I have no idea what runs through that boy's head. All I know is such obsessive chaos does not a chilled half term make.  One thing that often escapes the radar of typical families is the complete lack of childcare for kids with additional needs. As in, regular childcare that we can ring up and book onto does not exist. I'll just let that sink in for a minute, i...

These past couple of weeks have been a bit of a gamechanger for me. First up, I went to an incredible music festival out in deepest darkest Dorset. It's hard to put into words how much music means to me- it's my emotional escape. The place I go when I can't afford to lose my shit realtime, but need to vent and reset before cracking on with business as usual. It probably comes as no surprise that I'm a bit of an oldskool punk girl. Anarchic fuck-the-shitty-system type stuff holds a big chunk of therapeutic value for me, what with being stuck in such a system. Fighting every step of the way for my boy to be afforded the same value and rights as every other person in society. Check out Hard Skin-hands down one of my favourite sets at End of the Road- big swears and even bigger attitude. I'm not just into the shouty shit though- the hippie heart of me resonates with the ethereal, folky, ambient melodies. I'm currently girl-crushing on the inspiration of Laura Gibso...

Today I am suffering with acute bureaucracy fatigue. It's a condition characterised by eternal phonecalls to people who hold imperative keys for life support, reading up on legal rights and the SEN code of practice, trying to hold your shit together while facing the millionth diversion in the road of accessing aforementioned life support, and walking the fine line between megabitch and softly softly catchy monkey.  I think i'm fairly on point when I say that most parents find the summer holidays somewhat crazy. For working parents, there's the matrix of childcare to sort. For those at home, there's the frightening prospect of keeping all your children (and yourself) alive AND entertained for six weeks. SIX WEEKS. For us, this six weeks resembles something of a desert road, stretching on into a horizon we can't quite see. It takes us a ridiculous amount of hours to arrange appropriate support for our family to survive the heat of summer. It kills me to need outs...

Sometimes, there are too many things that hurt. Too much to contend with that’s tough. It seems to me that if you care even remotely about making the world a better place, the longer life goes on, the bigger the task and the smaller you shrink. I’m overwhelmed right now on a few levels. Personally, I’m tired. So. Damn. Exhausted. Lifewise nothing is mammothly different at the moment. There’s the constant kids. The constant B-admin. The constant two-steps ahead to ensure life happens for everyone, even if it is to a less-than-optimal degree. But relatively speaking, we’re in a slightly smoother patch. B’s seizures have lessened and as a result he’s been storming school. The girls are getting more independent and it feels a little easier to breathe. Although, disclaimer, I am still that mum who forgets every fucking form and sneaks into events frazzled and late. The ones I remember at all, that is. So it got me thinking; why, even in a good patch, are things so tricky? This week...

When people first discover I have a son with significant and complex needs, their instinctive reaction is often a slight but detectable head tilt, and a fleetingly brief expression of discomfort rapidly replaced by a somewhat sad, somewhat constipated (I can never quite figure it out) half-smile. Then to fill the thick, awkward silence I've just induced comes, 'I'm sorry. That must be hard.'  I'm not in the business of tiptoeing around issues and my inner monologue regularly goes AWOL at the most inconvenient of times, which I'll admit, sometimes gets me into trouble. Bull in a china shop springs to mind, but anyway, in scenarios like I've just described, I think it's probably a positive thing.  Truthfully, it is hard. Truthfully, as any loving parent would be, I'm frustrated by how difficult everything is for my child. I abhor above anything his medical issues- the brain damage; the unpredictable seizure whirlwind that sweeps through at random...